Their pain is immense. To the point that they want to die. Hell, sometimes I want to die. My friend Melissa wrote a touching post on this very topic: http://drsnitwithlupus.blogspot.com/2010/08/yes-you-should-want-to-die-right-now.html. She also gave me hope for how to deal with doctors in a more productive and less bitter manner, and for that I am very grateful.
My pain medication is nowhere near potent enough. I hit pain levels that I am physically incapable of using coping skills towards.
As I said to a good friend, I was vibrant, young, funny, and cute (as is she!)...but it is like we are mourning the death of ourselves, while still being alive to watch it.
How does one deal with such a state of existence??
- Positive coping skills keep me alive.
- Good pain medications keep me alive.
- An excellent support team - my boyfriend and family keep me alive.
- This blog keeps me alive.
- Twitter keeps me alive.
- Being there for some of my beloved friends keeps me alive.
The list is short. But it is important all the same.
I talked to my mother today and it was amazing. She is willing to be there with me at my pain clinic on Monday, and she is willing to fight for better medication. I need an advocate (especially a pharmacist advocate!).
If not, we will ask for a referral. Simple as that.
xoxo,
Annie
9 comments:
Beautiful Annie.
Thank you for you. Thank that mom of yours too for me.
The power of the internet is so misunderstood, as we often are. But it truly is a lifeline, and for that and meeting people such as you, I am so happy for.
In this together.
(and kneeling will be saved - not for gardens) ;)
Love, Rhian
SO PROUD OF YOU. Did you read that article about women having/experiencing more pain and in more affective/emotive ways than men that just came out? Makes so much sense that men would not be able to UNDERSTAND or comprehend HOW you are EXPERIENCING your pain and how you could not EXPRESS it properly when all you have are TEARS AND FEARS AND GIANT EMOTIONS...
So proud of you. This is big stuff. There is an entire science behind pain medicine. A SCIENCE BEHIND IT. You can look it up... I hope you get taken care of. I truly do. I am in your corner. I've got your back.
LOVE YOU!
xoxo
Melissa
Good luck. And good for you. :)
Thanx for sharing your thoughts/feelings, and Dr. Snit's post.
I felt both deeply. Hope the visit on Monday goes well. Sometimes you do need a someone else to help you be your own best self-advocate -- moms are great in those roles!
Will be thinking of you on Monday.
Annie, good for you for bringing an advocate. Sometimes when we need something from our doctors we may be too close to the center to relay to them clearly without emotion. Although I believe a good doctor will see that our emotion is disease driven not a mental health issue. Best of luck to you and you've got a great mom. Tazzy
Just stumbled across your blog. I have POTS, possibly CFS and numerous other things.
Pain is something I live with every second of my life. Have you tried magnets? Sounds crazy but they do help.
Thank you everyone for your sweet comments.
Pain is an epic battle, and one that no one can fight easily.
I hope you all have people on your side.
xoxo
I am SO glad that you're mom is going with you. My husband goes to all my doctor's appointments. He's my patient advocate. Most doctors give me better treatment when he's there with me. It's as simple (and sad) as that.
Oh Annie, I am in tears reading this. I'm very glad you are bringing your mom. I brought my husband with me to my internist and he helped convey just how severe the pain is, and the doctor listened. I'm very outspoken and brave usually, but being in severe pain all the time and then having to "Prove" it just takes it's toll. I hope you get what you need, you deserve it, don't forget that. You are very important to lots of people all over. Hugs, Patti
Post a Comment